When someone you love is diagnosed with Parkinson’s Disease, it can feel like your whole world has changed. Parkinson’s is a progressive neurological disorder that affects movement, mood, and can affect cognition; around 153,000 people in the UK live with this debilitating condition1.
For Good Care month, we want to acknowledge that, while the journey can be challenging, your support can make a profound difference in your loved one’s quality of life.
1. Educating Yourself on Parkinson’s
Understanding Parkinson’s is the first step. Learn about its symptoms: both motor (like tremors and stiffness) and non-motor (such as depression, sleep disturbances, and cognitive changes). Medics estimate that as many as 88% of Parkinson’s patients experience sleep issues2. Knowing what to expect helps to prepare you and respond with empathy.
2. Create a Flexible Care Plan
As PD progresses, the person’s needs will change. A well-structured care plan that evolves over time is essential. This includes routines for medication, meals, exercise, and rest. Consistency can provide comfort, while flexibility ensures you’re ready for the unexpected.
3. Support Daily Independence
Encourage your loved one to stay as independent as possible. Small adaptations—like using adaptive clothing, installing grab bars, or switching to utensils with larger grips—can empower them to maintain dignity and control over day-to-day tasks.
4. Prioritise Emotional Well-being
Parkinson’s doesn’t just affect the body; it impacts mental health too. Depression and anxiety are common. Encourage open conversations and consider involving a mental health professional. Support groups, both in-person and online, can also be a lifeline. Charities like Parkinson’s UK run 365 local support groups across the UK3, providing a safe space to share worries and experiences, organising talks by healthcare professionals, and putting on local social activities.
5. Stay Active Together
Exercise is one of the most effective non-medical treatments for PD. Activities like walking, dancing, or tai chi can improve balance, mobility, and mood. Research has shown that aiming for 2.5 hours of physical activity a week can help people with Parkinson’s take control of their condition4. Doing them together not only boosts health but strengthens your bond.
6. Communicate with Compassion
As speech and facial expressions may become limited, communication can be frustrating. Be patient. Maintain eye contact, speak clearly, and allow extra time for responses. Sometimes, a gentle touch or shared silence says more than words.
7. Plan for the Future
Discuss long-term care preferences early. This includes legal and financial planning, advanced directives, and potential transitions to assisted living or in-home care. In the UK, there are around 18,000 people with Parkinson’s who live in care homes5. These conversations can be difficult but are crucial for peace of mind and empower your loved one to make decisions whilst they have the capacity to do so.
8. Take Care of Yourself
Make time for your own health, hobbies, and social life to avoid experiencing caregiver burnout. Seek respite care when needed, and don’t hesitate to ask for help, be it from family, friends, or professional services.
Improving Quality of Life for Parkinson’s
There is an unmet need for new and improved treatments to help those living with Parkinson’s disease; many people do not respond appropriately or suffer side-effects from current approved medications and there are not yet any approved drugs that exist to slow the progression of Parkinson’s.
MAC Clinical Research is conducting a new study for a potential Parkinson’s disease treatment, but we need your help. MAC are looking for individuals aged 50-80 living with Parkinson’s to participate in our clinical trial.
To learn more and register yours or a loved one’s interest, please visit our Parkinson’s Disease Research webpage.
1 Parkinson’s UK – About Parkinson’s
2 Movement Disorders – Sleep Disturbances in Parkinson’s Disease
3 Parkinson’s UK – Local groups
4 Parkinson’s UK – Study reveals benefits of physical activity for Parkinson’s symptoms
